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cancun01

non convulsive absence status epilepticus

Hi!! I am new to this site. I am hoping to find others like me...or maybe to help or giv any info I have learned. I was diagnosed with vertigo seizure disorder when I was 5 yrs old....I would get dizzy...room spinning etc. which would then result in vomiting. I was put on Dilantin which I took until I was 8..I had severel EEGs during this time...and they were all abnormal. Stress always triggered yhe seizures. My parents got divored when I was 5. My mom took me back and forth to neurologists. Then my mom moved out of state when I was 8....I lived with my dad. He had a hard time believing the diagnoses....so I was not treatetd from 8 yrs old to 36 yrs old...at 36 I had lived with vertigo seizures several times a month...then one morning 30 yrs later I woke up one morning...did not know my name....where the bathroom was in my house....what year it was...my husband rushed me to the ER...they called my current nerologist in and he gave me a shot of Adavan....and I snapped out of it...by yhat time I had been having a on going seizure for more than 6 hours..I wad diagnosed with non convulsive status epilepticus......put on Keppra 2000 mg a da...no seizures for almost 2 yrs until a month ago....I had another one....the same thing...I joined this site with the hopes of finding others with a diagnoses like mine....my doc says it is rare...no convulsions.....any and all replys and responses will be much appreciated.

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Re: non convulsive absence status epilepticus

Cancun

Welcome

Your post was interesting when read. As for vertigo seizures I can say nothing. I have never had them. The names of the epilepsy I have are Grand mal,Pettit mal and Focal motor. As for types of seizures mine range from auras to a grand mal seizures full ocnvulsion. When I was younger most of my seizures were focal motor which can range from partial seizures to complex partial to full blown convulsions without blacking out. I could see hear and understand everythng goign on around me.

Now I saw your post and it is rare for an epileptic to have non convulsive status epilepticus. That would make me keep wondering why I can't get focused. I am glad they took care of you and I know that it had to have been wellllll can't use those words so difficult for you and your husband.

I have had ststus epilepticus The convulsive one. I was having 40 seizures and hour. I passed out after the third seizure and came out of a coma 3 days later. I was told I had been taken out of it and when Mom ws coming to get me I went back into it. Generally speaking most people can get out without much problem but going into status twice rarely do theyy come out without having problems. I can say that if it weren't for a mothers prayer I woudn't be here today.

Now th medicine you are taking is one of the best medicines I have taken for seizure control. The list of medications I have been on would be long since I have taken most fo them on the poster in my neuros office. He knows it tooKeppra has reduced my seizure count from 2-3 a week to maybe 4 a month. Keppra has also reduced the length of time in the seizure and reduced the time it takes to get back to normal. My complex partial seizures used to last 1-2 minutes and focus time would be 15-30 minutes. Keppra has really reduced those times to 5-10 seconds for the seizure and ambe1-2 minutes to focus. I have has seizures while talkingon he phone and the people I was talkig to knew nothing about them. I have also had seizures while people were here and talking and they didn't know I had them.

You might want to look at the My Epilepsy Diary. By using it your can keep track of issues medications and other things and it can be sentto your neuro. He might be able to find possiable triggers which can cause your seizures.

Hope this helps  

Joe

Re: non convulsive absence status epilepticus

Joe

Thank you for replying and sharing your story and foe welcoming me to this site. Having any type of seizure is so scarry. My neruologist is sending me to a colegue of his, who is a sub specialist...speacializing in seizures similar to mine.....so I am anxious about that...I am looking forward to learning as much as possible......what really freaked me out was after my latest EEG a week after my second non convulsive status elepticus seizure.....kind of like you I had four seizures during the 20 min test...but I did not even feel anything or know I had a seizure....every lead on the EEG was spiking four diff times....I felt like I had a bomb strapped to me ready to go off at any time. That is the scarry part to me.....and another strange thing is after this one I felt physically tired and somewhat like I hafd the flu....and that lasted for a week......but now I am having some days where I feel great and others where I feel dizzy etc....I had no side effects from 2000 mg of Keppra, but when it was increased to 2250 mg the occasional dizziness started....but I am wondering if it is from the last seizure....did it alter something in my brain...or is it the incresed meds....I personaly feel it was from the last seizure.....hopefully the sub specialst might offer more info....

Wow....your story is quite something.....I am glad you have meds that help you....I will check out that diary....I know that will help. Also thanks for the info, it is great that you are so knowledgeable about whst kind of seizures you have.

Cancun

Re: non convulsive absence status epilepticus

Cancun

I think the diary will help you especially if you make note in the pad in it.

Now as for seizures and being tired. A seizure does drain energy. It doen't matter which seizure it is whether it is a partial seizure or a tonic clonic or any other type they all drain energy. Back when I was diagonsed they had names of seizures. Grand mal Pettit mal along with others many seizure types can can land in different names of epilepsy. I also did a study because I wanted to know what epilepsy was and the doctors would not answer my questions they would and did talk to my mother.

All a seizure is is an electrical impulse hitting wrong in the brain which causes a chain reaction. That chain reaction is the seizure. Think of lining up dominos all lined upthey are fine until you tap one and it hits the next which hits the next causing them all to fall down. Thats a chain reaction. Your AEDs would be like a finger going between dominos keeping them from hitting which stops the chain reaction. The electrical activity is also energy so every seizure drains energy.

As for knowledge about epilepsy back when I was diagnosed there was no computer no i-pad, we hadn't reached the moon. I wanted answers to my questions. In english class we had to write an essay. That essay gave me the opportunity do do the research which I did. My essay got an a/b. I ended up reading it in front of all of my english teachers classes. My science teacher heard about it and you guessed it it was read to all of his classes. The vice preicable heard about it and you guessed it  the s=essay was read to the entire student body in the next assembly. I went by to see Mr Ramey 5 years later and I saw the essay framed on his wall. I found out that they used ti 2-3 times each year to inform studenta and everybody about what epilepsy is what can be done while people are in seizures. That not all seizures are convulsive and that sometimes student being written up for day dreaming could be having seizures. SO I was like you wanting to know more about what I had

Hope you get answers and the keppra helps

Joe 

Re: non convulsive absence status epilepticus

A good look at the large idea of non-convulsive epilepsy is contained in an educational book titled Nerves in Collision by Walter C. Alvarez, M.D. Best wishes.

Re: non convulsive absence status epilepticus

Thank you so much for the info! I plan on checking out that book....I want to learn as much as i can about what I have!!!

Re: non convulsive absence status epilepticus

Hi CanCun01,

My favorite book on nonconvulsive status epilepticus is "Nonconvulsive Status Epilepticus" edited by Kaplan & Drislane (Oct 2008), but, at $90 to $109, I still don't own my own copy. Amazon-dot-com has a search preview of some of the hardcover edition and an intro Kindle sample. Books-dot-google has a preview, too:
samples for vertigo,
http://books.google.com/books?id=YkRH6cL1ziAC&printsec=frontcover&dq=non...
for absences,
http://books.google.com/books?id=YkRH6cL1ziAC&printsec=frontcover&dq=non...
for clusters,
http://books.google.com/books?id=YkRH6cL1ziAC&printsec=frontcover&dq=non...

Sometimes, my periodic clusters become (for a day or two) either dense, frequent, or continuous enough to be regarded as my being in status epilepticus, which is difficult to accept when they were simple partials to early moderate complex partials. But, once they regularly started to kindle into secondarily generalized tonic-clonic seizures that often wouldn't pause at all between cycles, the label "status epilepticus" is more stickier. I get enough early warning of the start of clusters that a strong dose of Keppra will keep them more simple and more separate & distinct than tending to any more lasting continuousness than minutes. (I minimize my regular dosages of Keppra between the about monthly clusters, which is unorthodox, but for me, it works & saves on Keppra (I dislike the Valium family over potential of dependence in lesser than formal or more than infrequent usages, which would be a little more than monthly in what-not situations)).

Tadzio

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